Friday, August 31, 2012

We made it out of PICU this morning and into a room on the 3rd floor.  Just being out of the confinement and loud ringing and buzzing noises of the PICU gives us all a boost of energy.  We are in a room with a window where the sun shines through.  We have our own bathroom and bathtub should the need arise.  Allie's spirits are much better today since we got to the room.  They are alternating her adevan and her tylenol with codeine so that she isn't in any pain.  She still cannot even have ice chips until the bowel resection starts to exhibit peristolysis. (tummy sounds).  We are blessed because she isn't even asking for anything to eat or drink.  Normally after her surgeries, she is asking for spaghetti.  She apparently knows her own body better than we do.  She no longer has a catheter and used the bathroom on her own today.  She has been up walking and even went to the play room and painted a picture.  God knew we needed a boost and in our darkest hour, gave us the tiny bit of sunshine we needed to get through the rest of our stay here.  She is scheduled for an MRI at 8:30 tonight which means it will be around midnight.  The room on the floor also has a couch for a parent to sleep on, instead of an uncomfy chair that I had to make the best of last night.  I am hopeful that we will both get some much needed rest tonight and possibly be released sometime tomorrow or Sunday.  God is so good to us, we are truly blessed.

Thursday, August 30, 2012

So they took her back for her surgery at 7:30 this morning. At 1:30pm, Dr. Dutta came out and explained the complication.  She had scar tissue that had fused the omentum to the fat surrounding the colon from her appendectomy a few years ago.  In order to harvest the omentum, he would need to cut out part of her colon and resect it. . . . . . . . . Okay . . . . . . . small freak out, but then good to go.  Procedure finished up about 3:30 and Dr. Dutta again said, that it is critical that her resected colon have a chance to heal. If it leaks or becomes infected, she will have a colostomy bag for a couple of months while it heals. . . . . . . . Okay . . . . . little bigger freak out, but good to go.  Dr. Steinberg comes in and tells us how successful the tranposition to the left frontal lobe went.  He was very pleased and expects great results from it in preventing her stroke and tia activity.  GREAT!!!! . . . . . feelings of relief.  Then I see her, 4 incisions, swollen neck. Large suture line in a T across her head. Swollen eyes and bladder.  Can't pee and her tummy hurts.  The pulled the catheter out to see if she would pee.  If she doesn't pee in the next 5 minutes, they are putting another catheter in.  She can have NOTHING by mouth until she passes gas and they hear bowel sounds. NOTHING, not even an ice chip. Stick a fork in this chick cuz her days of hangin loose in the PICU are over.  I am so ready to blow this popsicle stand and go back to land of the normal. I am ready for Allison to NEVER HAVE to do this again.  She has been so strong and so brave for so long, it gives me pain to watch her go through this all over again.

Tuesday, August 28, 2012

Started our morning out with a 40 minute TIA.  Finally Allie perked up and wanted to go to the beach.  Took a ride out to Santa Cruz and had a great day. We see Dr. Dutta tomorrow at noon.  He is the doctor that will harvest the omentum and stretch it while threading it under her skin to her brain. Each day brings us closer to an experience that we have had before, but wish we could forget.  Thank you all for your prayers.

Monday, August 27, 2012

Met with Dr. Steinberg today. He has done about 20 of these omentum transposition surgeries.  He does them with a general surgeon, this time, Dr. Dutta.  Dr. Dutta harvests the omentum, stretches it and with only an extra incision at the neck, threads it under her skin and up to the frontal left lobe of her brain.  The frontal left lobe is the area that continues to have inadequate blood flow thus causing her tia activity.  There are risks although small for perforation of the bowel or bladder, hyperperfusion or brain bleed, stroke and death.  The omentum will continue to grow with her as she grows.  She had her blood drawn and then enjoyed a swim in the hotel pool.  We see Dr. Dutta on Wednesday.  Keep us in your prayers please.  She has been so brave.  She is my inspiration!

Sunday, August 26, 2012

We are in Palo Alto for what will be Allie's 5th Brain surgery.  She is scheduled for surgery this Thursday, 8/30/12 and they are doing the Omentum Transposition.  I am very nervous because it isn't something he has had before, in fact it is an 8 hour surgery and involves two different surgeons.  We see Dr. Steinberg tomorrow and Dr. Dutta on Wednesday.  We are staying in a beautiful hotel in an amazing city where the weather is 68 degrees the entire year.  Allie is swimming in the heated pool and we are ready to rest ourselves in preparation of the upcoming surgery.  We have an idea of what to expect, this being our fifth surgery, however, we are in prayer that her recovery will be similar to the other surgeries.  She always does so well and I pray that this week will be no different.  She ate her favorite Olive Garden Fettucine Alfredo tonight compliments of her Grandpa Chuck.  Memaw, Grandpa Chuck, and I are enjoying our ability to appreciate our differences and embrace a complete and total love and support of Allison during this time.  I will continue to keep you posted on the events of the days ahead.  The book "Gifts of Grace" should be out in no more than 4 weeks.  I am already thinking that there may indeed be a sequel. 

Sunday, August 12, 2012

So Allie continues to have TIA activity sometimes twice a day.  Our blessings continue each day that we have her.  If we were not scheduled for brain surgery in 2 weeks, I would be really worried about her.  We are all transitioning to a new school in 4 days and the excitement is tangible. My story is due out in a few short weeks, and that is super exciting.  I can't wait for everyone to read it. God has been so good to us and He is continually blessing us.  We just have to follow and trust where He leads.  I never pictured myself doing what I am doing this fall, He lead me here and He will not fail me. I am nervous-excited about the plan He has for all of us this year.

Thursday, August 2, 2012

I have to be honest.  I could not be the "rock" I am for Allie without the love and support of my friends and family.  I rely primarily on God for strength just to get me through the days most of the time.  My emotions are an up and down crazy rollercoaster and today was rough.  My parents have been divorced for more than 35 years and there are still hard feelings involved.  It is still difficult for them to be in the same room together.  Unfortunately, because Allie has had 4 brain surgeries in the past four years and is about to have number five, they have been thrust together way to often.  I had a dream the other night that my son Brennan was playing in the OU marching band for the first home game of the season.  Unfortunately, in the dream, my parents ended up with tickets that found them right next to each other at the game.  Unable to take the stress of it, I tried as hard as I could to buffer the situation.  While trying to keep everyone happy, I missed my son's half time show.  Hmmmmmmm.  Something to think about.